Everyone has a story

By riverkings Latest Activity April 19, 2011 at 8:24 am Views 4,186 Replies 13 Likes 4

riverkings

I would love to get to know more people in this community. Please tell us your story, when did you start having seizures? How has it effected your everyday life? What kind of treatments have you tried? What has worked and what hasn't? ect..

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Replies (13 replies)

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  • kareeeeena
    kareeeeena April 16, 2012 at 10:15 pm   

    Hey, i was diagnosed with epilepsy when i was 11 & ever since then have been on medication first i was on tegretol and until last year have been on 3 different medications trying to find which one works because doctors have said that i have out grown the tegretol. It has effected my everyday life such as work, i'm currently not allowed to work for the time being until my medication has been sorted which frustrates me the most because i am graduating next month as a criminologist & a sociologist so its really frustrating and cos me and my BF really need the money! The one thing i have found hard though is just telling people that i am epileptic because i don''t want them to be all scared around me and treat me differently and that feeling of being a burden on others.

  • daydreamer630
    daydreamer630 July 21, 2011 at 7:09 pm   

    Lets see,
    I was diagnosed when i was twelve but i had seizures long before then. I have type one diabetes and every seizure i had was related to low blood glucose(bg) even when BG was normal. That was up until i was 12 and i had a seizure, hit a table and then Christmas day awoke in the hospital. I was at my fathers seeing as my parents are divorced for Christmas eve. And a blizzard had rolled into are sleepy little community. My dad, was drunk when it happened and was worried about getting in trouble because i was in his care. So my frantic mother and grandmother braved the storm and rushed to be by my side. They held my hand as i was reduced to a 2yr olds state in coma and just screamed as 12 staples were put in my head because a few Dr's didn't want to figure out the ongoing problem i had dealt with all those years before. Now years later i'm still struggling. My seizures have slowly diminished but now i've come to another problem. Meds, seeing how i have a staggering about off heath issues i can not bring myself to take a med that makes me feel awful and out of my head when i my mind is the only thing i can hold on to. So being 20yrs old i managed to get through school and am thinkin about college. But theres a problem, i can't drive! Being an epileptic off of meds means no driving!

  • Rightbundlebranchblock
    Rightbundlebranchblock July 5, 2011 at 2:42 pm   
    Edited July 5, 2011 at 2:44 pm by Rightbundlebranchblock

    I sustained a head injury to my right side when I was in my late teens. I've had chronic headaches all my life, even before this injury. CT scans showed nothing. About 10 years ago, I went off of Ativan on my own, without medical instruction. I had a Grand Mal seizure, unaware until I woke up in the ambulance on my way to the hospital, covered in vomit and urine. I went on no medication at that time. The medical consensus was an electrolyte imbalance. About 6 years ago, I had, what my MD called an "absence seizure". At that point I was referred to a major medical hub, and saw a neurologist for the first time. After a regular EEG, and a sleep deprived EEG, I was diagnosed with right temporal lobe epilepsy, and started on Lamictal at that time. I've had no further seizures, THANKFULLY! One thing I HAVE noticed is a tendency to lose my balance, and always to the right side. Is that symptomatic of the epilepsy? Of further note: when I had the Grand Mal, I hit my head so hard, that I developed bilateral traumatic cataracts. I'm concerned about this balance thing. I'm a 55 year old female.

  • Jeff1952
    Jeff1952 June 10, 2011 at 1:31 pm   
    Edited June 12, 2011 at 12:16 am by Jeff1952

    My seizures began at birth. Neurology was not as advanced as it is today, so back then is anybody's guess as to which form of treatmnet would work. None of them did until I started with the first of four (three have retired) neurologists that I am still going to today. I was 5 1/2 at the time and the drug of choice was Mysoline (Primidone) which I was started on and am still taking to this day. The Phenobarbatol or the Dilantyn didn't work or had side effects that were undesirable. Mysoline either had no side effects, or if it does, they don't affect me. I don't tell anyone (includng my eployer) that I have a seizure disorder because as long as I am on the Mysoline, I'm not going to have any seizures, and besides, I understand that Mysoline is long-acting, so iven if I miss a dose I'm still okay and won't have a seizure. I am now 58 and physically active. Nobody knows anything about my seizure disorder unless I tell them. I look and act just like any normal human being. I have been able to lead a normal life including driving until recently when I had "a small stroke in the oxibital (I think the spelling is correct) lobe of the brain" that affected my peripheral vision. I fear the dammage caused by the stroke is permanent as two of my doctors (my opthamalogist and my neurologist) have advised that I not drive.

  • AuntieM234
    AuntieM234 June 11, 2011 at 10:05 pm   

    Dear Jeff: I'm sorry to hear about the stroke. However, you seem to do well at coping on a day to day basis. I believe you are fortunate that the Mysoline (primidone) has effectively eliminated your seizures. I guess it all depends on your chemical makeup and how your system reacts. Congratulations! ;-) Mara

  • Jeff1952
    Jeff1952 June 11, 2011 at 11:40 pm   
    Edited June 11, 2011 at 11:40 pm by Jeff1952

    Dear Mara,

    Thank you for your encouragement. I've been seizure-free, thank G-d, for 53 years. May remain seizure-free for another 53 years. -:)

    Jeff

  • meant2bhere
    meant2bhere May 28, 2011 at 12:17 pm   

    I started having seizures when I was eight years old. I was born with cerebral palsy but I was not born with seizures. I didn't have my first one until about a week after a car accident I was in. It has affected my speech tremendously and as far as my everyday life goes I can do pretty much everything anyone else can do my age except drive and stay home alone for long periods of time. I have a home health aid that stays with me for nine hours a day five days a week, basically as a babysitter. I have been on every drug that there is and right now I am on a combo of Topamax, Keppra and Vimpat, with Rectal Diastat for emergencies. And my seizures have quieted down to only about one every three weeks or so. Before we found this drug combo I was having about four to five seizures a week and had to be brought to the hospital every time for them to stop the seizing and I would be put on a ventilator and everything, every time. So I feel like the luckiest person alive right now!! I have learned the best lesson of my life due to my seizures, and that is, to cherish every minute of every day, because you never truely know when your last moment will be, so live happy and live life to the fullest and make sure everyone around you knows that you appreciate and love them, don't just assume they know; tell them!!

  • AuntieM234
    AuntieM234 June 8, 2011 at 8:09 pm   
    Edited June 8, 2011 at 8:09 pm by AuntieM234

    Dear meant2bhere: You're a very courageous and wise person! If I was wearing a hat, I would take it off to you! ;-) Mara

  • riverkings
    riverkings June 2, 2011 at 9:09 pm   

    Thank you for sharing your story. You have been through a lot. What a great attitude you have. You must be a great example of strength to those who know you!

  • VJ 918
    VJ 918 July 8, 2011 at 10:32 pm   

    Hi all!
    I'm new here.
    I've had Epilepsy since I was 7 years old. My dad was an alcoholic. Every time I went into a seizure, after I came out of it he'd beat me. He blamed me for having Epilepsy. He said, he was going to beat it out of me. He did beat me, but only made it worse.
    Then at age 11 he had me sent to a "Nut House." I was there for 2 years. Then came home. At age 14 he threw me out of his house. I was homeless until I was 20 years old.
    I'm the oldest of 9 children. My whole family has disowned me.
    I'm 55 years old now. I'm happily married to a wonderful man. Along with Epilepsy, I also have Breast Cancer in my left breast, Chronic Bronchitis, and RA. He is very supportive and loving. I also have a 20 year old son who is there for me also.
    My son is allergic to bees, has Scoliosis, depression, and ADD.
    Ever since I was 13, I have had Jesus, in my heart and my life. Jesus, gets me through the hard times and the good times.
    Some times I think I'm a catch all for diseases.
    Just cause I have so many different diseases, I'm still the same loving and caring person inside. I'm not going to let any of them stop me. I'm going to keep on fighting. Jesus, will guide me and be beside me through the fight.

  • VJ 918
    VJ 918 July 8, 2011 at 10:32 pm   

    Hi all!
    I'm new here.
    I've had Epilepsy since I was 7 years old. My dad was an alcoholic. Every time I went into a seizure, after I came out of it he'd beat me. He blamed me for having Epilepsy. He said, he was going to beat it out of me. He did beat me, but only made it worse.
    Then at age 11 he had me sent to a "Nut House." I was there for 2 years. Then came home. At age 14 he threw me out of his house. I was homeless until I was 20 years old.
    I'm the oldest of 9 children. My whole family has disowned me.
    I'm 55 years old now. I'm happily married to a wonderful man. Along with Epilepsy, I also have Breast Cancer in my left breast, Chronic Bronchitis, and RA. He is very supportive and loving. I also have a 20 year old son who is there for me also.
    My son is allergic to bees, has Scoliosis, depression, and ADD.
    Ever since I was 13, I have had Jesus, in my heart and my life. Jesus, gets me through the hard times and the good times.
    Some times I think I'm a catch all for diseases.
    Just cause I have so many different diseases, I'm still the same loving and caring person inside. I'm not going to let any of them stop me. I'm going to keep on fighting. Jesus, will guide me and be beside me through the fight.

  • riverkings
    riverkings July 11, 2011 at 1:42 pm   

    What a terrible experience. It always amazes me the reactions of some people.
    When we realized how severe ,my daughters seizures were I remember calling my grandfather and telling him about it, she was only a baby at the time. He asked if it was terminal and I told him "no but it may leave her disabled" I was shocked when he said "then she would be better off dead". I'm glad you have found joy in your life. I was just talking with one of my daughters this morning about how in the end we determine how happy we will be in life, not other people and the way that they treat us. It sounds like you are a perfect example of that. Thanks for sharing.

  • AuntieM234
    AuntieM234 July 9, 2011 at 4:14 pm   

    My heart breaks for the little girl who was so mistreated, but rejoyces for the woman she has become! I'm pleased that your faith helps you through the bad times and that you were blessed with a loving, caring, and supportive husband. Your son is also blessed; he has you for a Mother! I have never been able to understand how some parents are able to be so cruel to their child! Of all people, a child's Mother is suppose to protect their children! I'm sorry, my dear, but your parents must be ignorant to be so inhumane to her child. I'm so very pleased your faith sustains you! Thanks for sharing your story! ;-) Mara

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